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Author
Topic: Starting HIV treatment early? (Read 6500 times)

I was diagnosed more than 1 year ago and I’m not in ARVs yet but guess I will.My doc suggested me to start treatment even thought my numbers are still pretty good (I think so). He told me that starting from my actual cd4s it is very probably that I will have very good numbers soon (near the levels of a non HIV person) and that I may reduce the risk of non-AIDS related illnesses….The true is that I don’t know what to do…Does anybody have experiences in this topic (starting meds early –above 350 cd4s-)?

Miss P's answer is a good one if you want read all that. I started in 1995, on a Clinical Trial, where you had to have Tcells above 500 to qualify. They never went below that and, even tho I tested Poz in 1984, (25 years, if anybody's counting) I've never had an OI.

My doc at the time (1995) said get on the meds right away. I still think it's good advice. You can't save your Tcells like money in the bank.

If you're committed to 100% adherence I would definitely start now. Your viral load is not low. Plus you'll feel good about kicking the crap out of the virus. Check my numbers. Been feeling great with no side effects!

Hi ya,I would go on meds. if I was you , I'm saying that because I'm regreting my decision . I was procrastinating meds. to the point that my cd4 was 17 (how stupid is that?) and also I've heard many times that is really hard to get back cd4 when you start meds. late. My cd4 didn't go over 211 thru last 4 years.every blessingLukas

Logged

"Give me a sense of humor, Lord, Give me the grace to see a joke,To get some humor out of life, and pass it on to others."

I also agree with starting meds sooner rather than later. I started only 3 weeks after infection, and despite starting meds with a 190 cd4 count, I've made significant progress. I don't think my cd4 would have bounced back the way it did if I didn't start meds right away.

I say go for it, as long as you are truly committed to taking them and not missing doses.

I also started soon, 3 months after being infected. Since then, 3 years ago, I've been always above 1300 CD4 and no VL, with no major complaints as per regards to meds. I am into Truvada, Reyataz + Norvir.

Last labs were up to 1700's.

In addition, I feel much better dealing with meds since the beginning. I don't know how I would standed to the wait and see aproach, seeing, meanwhile, year after year, my CD4 and health in general are getting worst.

I started on meds as soon as I was diagnosed with about 585 T-cells. It has been just about a year and my T-cells are over 1000. I have had little to no side effects from the meds, a few rashes, some achy joints but other than that, pretty good.

My #'s are similar to yours, although I think the % is higher. My last test was in Dec 08, and I had CD4 386 and viral load 131,000. My viral load has been consistently high for about six months now, and my doctor did recommend (rather strongly) that I get on meds, and he prescribed me Truvada+Atazanavir+Norvir. I decided not to start with Atripla because of its effect on Central Nervous System.

My #'s are similar to yours, although I think the % is higher. My last test was in Dec 08, and I had CD4 386 and viral load 131,000. My viral load has been consistently high for about six months now, and my doctor did recommend (rather strongly) that I get on meds, and he prescribed me Truvada+Atazanavir+Norvir. I decided not to start with Atripla because of its effect on Central Nervous System.

I haven't started taking them, yet, though. I'm too scared to.

just to start conversation (and maybe on a separate posting)

Why are you afraid to start meds? Have you considered the alternative if you don't start meds when you need to? It's would be a good thing to discuss your fears, and we're here for support (again...on another post)

I read an article about starting meds early but the thing is that even they say that “among those who started treatment before their CD4s dropped to 350, most achieved and maintained normal or near normal levels” they say too that “Although the study was not designed to determine whether restoring immune cells to normal levels actually translates into health and survival benefits, the authors state that the results lend weight to arguments in favor of starting ARV therapy earlier” So, it means that there is no study that determines whether high cd4s translates into health in the long run…The true is that I’m afraid of meds. At first, recently diagnosed I was ready to start meds (I thought there was no option) … but my doctor said me that it would be better to wait because of the side effects. Then I read, I get informed and I knew people with hiv status and who are in meds. I have a friend that suffers lipodistrophy (and he had a surgery in the neck) , another suffers neuropathies and another suffers high cholesterol (and takes meds because of that)…and I have others with low cd4s (above 200’s) who are healthy.

And then I’m confused…Sometimes I think it would be ok to start, but sometimes I think I could maximize the time before meds…

There is a new British study that finds a link between starting HAART below 200 cd4 and certain forms of cancer. I have not yet started and am also scared but in the long run it;s best to find that "sweet spot" to start if you are fortunate enough to know you are HIV+ BEFORE Tcells drop below 200. And it's probably best to start when they are still 350 to 500. Below is from the british study and the link:

CATIE News - British study looks at HAART and cancer

For over 25 years, researchers at London's Chelsea and Westminster Hospital have been collecting health information on HIV positive people who sought care at this institution. They have amassed a huge data set containing information on more than 11,000 HIV positive people. Recently they analysed this data set as part of a study focusing on cancers unrelated to AIDS.

Their findings suggest that HIV positive people face an increased risk for these cancers in the 21st century. Having a CD4+ count that has fallen below the 200-cell mark at some point in the course of HIV disease appeared to be a significant risk factor for such cancers. Troublingly, the study team also found an association between the class of anti-HIV drugs called non-nukes (NNRTIs) and one type of cancer. We discuss the significance of this association later in our report.

Actually your numbers are not all that great. Your VL is over 100,000 VL, and your CD4 % is on a clear decline. Once it goes to 13% or below, you are classified as AIDS, and you are not very far from that threshold. The only good thing about your numbers is the absolute CD4 count. If I were in your shoes I would start meds now. Easy to say, I know ...

My doc says the most important thing is the absolute cd4 number (when you are naïve) and that’s why he suggested me to wait . ..I’m ok and I haven’t had any OI.However, other doc suggested me to start meds and he explained me the same that some of you have already done. So, if I can avoid the side effects of meds (could be some months) and if I’m not in (apparently) serious risk of having OIs why to start? Well, it seems there are some advantages..Thanks every body… I think I will start on June, during summer holidays, after my birthday and after having finished my thesis (I want to be lucid during my dissertation without having side effects of sustiva ).

hi, it's me, Roberto. If you're feeling good, getting plenty of rest, alert, and comparatively healthy, then there is no need to start. Like you said, you've got some exams coming up and you need to be sharp. You're t-cells are low but not so low that you're risking some sort of OI. I would wait until after your exams.

But after that I would think seriously about starting. Lipodistrophy is a real concern. And so is neuropathy and high cholesterol but personally I think those conditions are more pervasive when brought on by opportunistic infections and meds than just meds alone.

I just started atripla within 3 months of my infection and 3 wks after my diagnosis (1/30/09). I wanted to get my viral load down as fast as possible because my partner is negative. My first and only blood work came back at vl = 800,000 and cd4 = 325. I have a feeling that my cd4 was way low when i was going through the ARS over christmas 08. i had pneumonia and a terrible flu that lasted 6 weeks. Anyway, i am hoping that this was the right thing to do. i feel pretty good that this will keep me healthier in the long run.Matt

Based on current evidence you are within striking distance of the recommend time to start treatment.

I very much agree with what doc says about long-term health = a non-HIV+ person.

but it's your choice, and it don't have to be Atripla, any modern combo will work.

it's a shame about the "10 years before meds" thing... this is true for a few people but not universally so. The important thing is to maximise your health n longevity. If this means early meds, it means early meds.

I was recently in your shoes and received two separate opinions if I should start meds or not. I was really scared too but after talking to a great ID Dr in San Francisco (check my prior posts for more info) I was convinced it was the best choice for me. Retrospectfully, I strongly feel that there is way too much negativity to starting meds. Also, I may be wrong, but starting meds with a CD4 count of 380 is not starting early. The ID Doc in San Francisco advised me that there is a trend at his clinic of shorter asystematic periods. I was infected in Oct 2007 and I had to start meds 16 months later. I had painful swollen neck glands and my CD4 numbers were crashing by my paranoid standards. However it is a individual choice in the end. I just did not want to catch the flu or something and watch my CD4 numbers plummet further and have to fight for months or years to get them up again. One of my motivators in taking control is that I am gainfully employed here in the LA area, and if I get sick...that means I don't make money. So, everbody has their individual motivators and reasoning for starting or avoiding meds. As they say, "To each their own."

It is not easy to start meds when feeling ok and if one reads all those posts about terrible side effects… well, it is less easy …But there is no option…so when it is time to start is time to start.As I wrote I decided to start meds on June 09. According with my own forecasts and considering the path of my numbers I will have cd4s around 350 . I think is ok since it will be 1 year without meds and without the toxicity in my body (because I considered starting meds one year ago) … But now I’m ready…to start in 3 months…with efavirenz (Sustiva) +Truvada. Thanks.

One thing for certain, the view on when to start is constantly evolving, but the guidelines have been consistent..

If one chooses to focus on CD4, which my specialist is more concerned about than the 100k VL line, 350 is still established as the recommended MED Point. (so to speak).

My numbers are nearly identical to your and my doc has made the same recommendation. BTW - I found it interesting as my CD4 drops, the VL dropped too. Although my doc just shrugged his shoulders.

I've decided to one more round of testing as I play with supplements to see if I can get a boost... but that is another topic for another forum.

As to your fear of meds and side effects. Yes there are of course "issues" and you know folks who are having issues. But it is noteworthy, when did they start? What was their CD4? Starting at 350 generally means better acclimation to the treatment. So while your witnessing these effects, what meds and when did you start are important pieces of information in assessing the risk of side effects.

While we of course should be focusing on other aspects of our own therapy via Diet and Exercise, these elements should be emphasized as well after medication starts. While HIV is noted for its Inflamatory and Metabolic effects, Meds as well can have an effect here. I would encourage you to understand that meds do their thing, but if you want to get the most out of treatment, that there are things that you can do for your self that may reduce these effects.

Additionally, for other common complaints for digestive issues, there are a slew of concepts that can be applied that may make it much easier to deal with the meds. For example, Nausea. There are many avenues, one of which is taking some ginger.

So while we all have to "prepare" ourselves for meds, there are strategies and tactics one can utilize to help cross that bridge. Because frankly, at some point delay will cause its own effects that are frankly life threatening.

350 is the line and we are both staring at it. My next test will tell me and I will follow accordingly, and I will build a new regimen to deal with the meds as best I can.

The most recent discussion and recommendation to come out of the CROI conference in Montreal a few weeks ago was to alter the recommendation of when to start meds from an absolute CD4 of 350 to a range of between 350 and 500 CD4s.

The reasons for the recommendation and discussion were already discussed here: Potentially long life with few or no HIV-related complications.

The earlier recommendations of CD4 350 or below were developed when the meds were more toxic and side effects more severe.

I started with a CD4 of 440 back in the days of the old meds. I don't regret it.

But the choice is an individual one and should include the ability of the person to adhere to the regimen.

I started just 3 months after getting infected. At the moment of starting mi CD4 were 1100, CD4/CD8 ratio 0.80 and VL 64.000

Since then, more than 3 years ago, I've been above 1500 CD4 and VL less than 50 copies per ml (last count, feb 2009, 1905 CD4, CD4/CD8= 1,48, VL<50) . Only had at the beginning an allergic reaction to Sustiva, thus had to change it for Reyataz-Norvir. Since then, no major complaints at all. Cholesterol, lipids, sugar, creatinine and the rest of stuff is within normal values, and, apart of some little gastric disturbances from time to time, and a skin tending to dry in my face (which is solved with an hydrating creme every morning) for the rest no major problems in sight.

Now my doctor is seeing me every 6 months, and labs are done every 6 months. I am used to take mi pills (just once a day) and in general I feel ok and comfortable.

I don't know what would be my health now if I had chosen to wait and see. But it will be surey worst than my health status right now.

I think, anyway, if these meds are supposed to be taken for a lifetime, what is the difference in the long term of taking them 3 or 4 years earlier? Long term secondary effects will tend to appear in any case. By the contrary, starting soon protects much better your bones, brain, gut... and there's more and more evidence that the sooner the HIV activity is controlled, the lesser risks of systemic inflamatory processes that could lead to heart disease, cancers, and so on...

And also, in my oppinion, the sooner you start with meds, the sooner you assume you are HIV+, and the sooner you start to take care of yourself: good eating, good sex, gym or sports, and facing your life just the way it is. This also helps to have a better health.

It should be noted that while current treatment guidelines say a patient should definitely start treatment when CD4s drop below 350, the don't say a patient shouldn't start earlier. They say the following:

Antiretroviral therapy may be considered in some patients with CD4 T-cell counts >350 cells/mm3. (See text for further discussion.)

And here's the lengthy "discussion" text:

Antiretroviral therapy may be considered in some patients with CD4 T-cell count greater than 350 cells/mm3.

Existing data are inadequate to recommend initiation of antiretroviral therapy in all patients with CD4 T-cell counts >350 cells/mm3. Any theoretical potential benefits could be outweighed by unknown risks or by patient-specific preferences. The clinician should refer to Table 5 for a list of potential risks and benefits of intiating therapy in these patients.

The short-term risk for AIDS or death at CD4 T-cell counts 350 cells/mm3 is low (Appendix Table 1b). Thus, the potential absolute risk reductions associated with treatment in such patients are small (Appendix Table 1a). Within the ART Cohort Collaboration, the absolute 3-year risk differences between those with CD4 T-cell counts 200 to 349 cells/mm3 and those with CD4 T-cell counts ≥350 cells/mm3 were only 1.3% (for those with HIV-RNA <100,000 copies/mL) and 1.7% (for those with HIV-RNA ≥100,000 copies/mL) [3]. These differences were similar through 5 years of observation [13]. The cost-effectiveness of early initiation of antiretroviral therapy in these patients is unknown.

Data from the AIDS Therapy Evaluation Project, Netherlands (ATHENA), have demonstrated that patients who started therapy at CD4 T-cell counts >350 cells/mm3 were significantly more likely to achieve CD4 T-cell counts >800 cells/mm3 after 7 years of therapy than those who initiated therapy at lower CD4 T-cell counts [6]. A long-term study based on the Johns Hopkins Clinical Cohort demonstrated that patients who initiated ART with a CD4 T-cell count <350 cells/mm3 were significantly less likely to achieve a CD4 T-cell count >500 cells/mm3 after 6 years of highly active antiretroviral therapy (HAART) compared with those who started therapy at CD4 T-cell counts >350 cells/mm3 [26].

Earlier treatment of HIV infection may also have positive public health implications, as it may reduce HIV transmission [1]. This may have significant implication in individuals in discordant relationships (i.e., HIV-infected individuals with HIV-negative sexual partners) or in individuals who continue to engage in risky behaviors.

Despite possible benefits of treatment of persons with CD4 T-cell counts >350 cells/mm3, there are also considerations that argue against therapy. First, the potential absolute reduction in risk of non-AIDS events/morbidity resulting from antiretroviral responses in CD4 T-cell count increase and viral load suppression is not large. Second, although there are now several reasonably safe and well-tolerated options for first-line regimens, the long-term toxicities remain unknown. Third, antiretroviral treatment requires life-long adherence to therapy. Some patients may find that the need to take daily medications decreases quality of life, even without side effects. Lastly, nonadherence to the regimen may promote the development of drug resistance.

The level of HIV RNA in a patient with a higher CD4 T-cell count is not strongly associated with short-term risk of AIDS/death and is a less important criterion for initiation of therapy than the CD4 T-cell count. Nevertheless, a high viral load is a predictor of more rapid progression to AIDS overall. Some experts may take viral load into consideration when deciding whether or not to start therapy in patients with CD4 T-cell counts >350 cells/mm3 [2, 27].

Clinical scenarios, the presence of comorbidities, age, patient readiness, potential impact on quality of life, and adherence should be considered in the decision of when and if to initiate therapy in patients with a CD4 T-cell count >350 cells/mm3. Some experts suggest that antiretroviral therapy should be initiated in the subset of persons who have evidence of a rapid decline in CD4 T-cells (e.g., a decrease of >120 cells/mm3 per annum) before it drops to a CD4 T-cell count of 350 cells/mm3 in order to avoid rapid immunologic deterioration and subsequent clinical progression.